Living Rare
A 30-day deep-dive into rare diseases: the challenges that those with these conditions experience, the work that is being done to support them, and the obstacles posed by society’s lack of awareness.
Awareness
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Resilience
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Understanding
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Awareness · Resilience · Understanding ·
About The Process
Interviews
To increase my own understanding of these conditions and eliminate personal misconceptions, I am going to interview members of 4 rare disease nonprofits that are doing incredible work in their fields.
Fundraising
Rare disease support nonprofits are often underfunded due to lack of recognition of the important tasks they undertake. To combat this, I will carry out fundraisers and donate the money to these nonprofits, allowing them to continue conducting lifesaving research and offering critical support to patients who experience and live with these conditions.
Final Product
I will create a final product (video, article, a combination of the two, etc.) discussing information from the interviews that will be published online and available to all. The aim of this step is to increase societal awareness on the topic by sharing the valuable knowledged I gathered from my interviews.
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